Can I ask if there’s a way to get health professionals to take your symptoms seriously even if your peak flow is your best?
Mine is at my best yet I’m SOB, yawning loads (stops if I use reliever), coughing and my breathing is noticeable to other family members.
It’s definitely not anxiety, and the inhaler helps but I’m using it approximately twice a day (have been for about a week). I just know that if I phone my gp the asthma nurse will say it’s ok as my peak flow is ok.
I’ve read about how some people’s peak flow isn’t a good indicator, but there was quite a lot of variation initially before diagnosis when I was charting it, but even when I struggle now, it’s within ok limits.
I wish it would show my symptoms it’s infuriating. Am I imagining it? I feel like I’m a fraud and don’t want to phone them.
Thank you lovely people x
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Emzcat41
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I don’t think there is an easy answer. My nurse seems to go on whether or not I am in the green, even though my pb keeps increasing. The thing they do take notice of, is how often I am using my blue inhaler. On review I always mention this if I am over using ( nearly always). They then ask about symptoms. If I do it the other way, say I am short of breath on occasions, they just say hmmm.
This doesn’t really help you I am afraid, as this usually happens during my routine reviews. ( Every 6 weeks in normal times.)
If I go to my GP he just tells me to “keep pushing the blues.”
Thank you , it’s helpful to know I’m not alone in this. I had my pb set before my symptoms were controlled so it may need adjusting.
I’ve only had one telephone appt with the nurse who advised me to try to not use blue reliever (really?!) and it may go away in winter (she said it could be hay fever despite no other hay fever symptoms) and that she wouldn’t schedule another appt with her.
I kind of feel quite alone. I think I’ll speak to gp she was much better x
It might very well to be a good idea to speak to your GP Emzcat.
Some asthma nurses are just plain clueless. I know the one at my GP’s surgery is. Mind you, so is my GP. He once told me that I didn’t need any changes to my meds and to just keep pushing the blues. As I walked out the door he said, “ Don’t worry. If you have an attack, which you most certainly will, I will prescribe for you.” Priceless!
I think your asthma nurse is saying the same thing.
It's a really hard one as my peak flow drops and I still don't always get taken seriously! You are right in the fact that peak flow doesn't always drop especially if inflammation is in the lower airways. I would keep a diary of symptoms, and triggers to back up the way you feel and ask your A.N if you can up your preventor temporarily or try a new one. You could also give asthma U.K a ring as they are fantastic, especially with the more unusual presentation!
My gp says you need something stronger if you are taking the blue daily. I went from 4 puffs a day to the occasional 1 when he moved me to Sirdupla . Really the blue is for instant emergency relief Good luck Marilyn
Sorry to hear that you’re struggling. I know you say you’re at your best PF and having issues that get relieved by ventolin. Have you down a PF post ventolin to see if it’s increased? It may be that your best has slowly increased (as you age it gradually increases then reduces as well as improved technique etc). Just an idea, because if you score higher post vent then you have a new best and it may explain your issues
Or you could give AUK a call about it and get their advice! The helpline nurses are lovely and can be reached on 0300 2225800 M-F 9-5. Alternatively their WhatsApp service is 07378 606728.
I think you are probably right my best PF was worked out before my symptoms were controlled so I think it’s out of date even though it was only at initial diagnosis about 4-5 weeks ago.
Is there a formula to work it out yourself or should I only ask dr or nurse to work it?
Your best is literally just that. How much you can blow out. If you regularly hit 500 that’s your best. If your best score is 150 (all with no symptoms) then you use that. So long as you’ve got it within 6-12 months. Next time you do pump do it pre and then 15 mins post. See if there is a change then you can report that. It sounds like they’ve used your predicted which is just that a guesstimate. My predicted is 440 my best is 630, a friend with the same predicted has a best if 350ish.
Hi Emzcat41. As others have said this is a really tricky situation to be in. I’ve had periods were my PF has been in my amber zone felt fine and had severe attacks while in green.
It also depends on the medic too. I had a GP who although I was having attack after attack put it down to anxiety as my PF was quite high.
At first I was willing to go with that until I realised that my attacks stopped after 5-7 puffs of blue and I brought up a lot of gunk afterwards. The attacks also stopped when my asthma medication was increased.
I decided to change practice and my new GP actually seems quite clued up and is willing to trust that I know my body.
I really wonder whether you have recorded an accurate PB. I was admitted in March with new asthma with a PF of 100, and no real idea of a PB. Expected PF for my age and height is 400 and we were aiming for that. However after several months of steroids I reached 510 which explains why I can usually cope at 400 but am really symptomatic at 350, 370 which for some people would be fine. So PF should not be used in isolation. I had an acute attack one morning when morning my PF was 400. If your PB was taken when not fully controlled it is meaningless and is false reassurance. Hopefully you can talk this over with your doctor, or have a referral to make sure the diagnosis is correct
This is a interesting read. My PB is 400. My red is 160! Im in real trouble at 260/270 and off to hospital. My amber is 310 but 320 is still very symptomatic. I go by my symptoms mainly if I'm even feeling rubbish even at 340 I treat with extra Fostair.
You could try blinding them with science (after all, “following the science” is all the rage these days!). Peak flow rates are based on a combination of factors and reflect the expected performance within the 95%tile range. A minority of people (5%) will be outside this range, even though their lung function is satisfactory for *them*. Conversely, 5% of people will be within this range, but it will not be a satisfactory state for them - you might be one of those.
I have had the same issue in the past. If I take the reliever I get more breathless and once they had me on so much and I got worse and worse. Then they said my peak flow was good and I needed less of my inhaler as it was making me breathless. I’m not saying that your symptoms are caused by it. But that was my experience. Now luckily I manage my symptoms with the preventative and have a powder inhaler in case I need it as the sabutomol inhaler made me keep gasping for air.
Hope you get sorted soon. Talk to your asthma nurse and say that your symptoms are real and you may need a different reliever.
My asthma nurse at gp practice always dismissed as peak flow was always good infact when I feel I'm getting worse it goes up then dips. But now I'm under the specialist team at the hospital the respiratory nurses there understand it's not just about pf, it's about symptoms and how your feeling. I felt I was imagining my symptoms for a long time an a fraud as no where near as bad as some people just occasionally winter struggles but actually it's been creeping a few years I was just either in denial or put it down to other things. In my peak flow book I write down lots of random bits like if I had the scratchy in my throat, hives, coughing, if I was at work or day off if I struggled walking just to help build a bigger picture also at times if I become tachycardic or anything. I dont know if that helps you at all. I would maybe give the helpline on here a call I think I'll do same.
Do you see the same one every time or different ones.
Try see the same one every time or ring up say your asthma is bad could you see a Dr as your getting nowhere when you see the nurse
I was like that last year but I had chest infection after chest infection all I got from asthma can't do anything until you've seen the consultant in the end i ended up in hospital. Then I was seeing different asthma nurses until I saw a different and she saw i was struggling so I tend to see her now. If you don't get anywhere only other thing is ask to speak to the manager see what happens then. If you get to bad nip upto A&E or your urgent care centre see them say your having problems then you need to see your Gp or duty Dr say you had to go upto either A&E or urgent care.
Just wanted to chime in and say I think about this all the time. My peak flow rarely changes even during bad attacks because my asthma seems to manifest more in my small airways. I wish more doctors and nurses were trained to know peak flows are not always an accurate assessment of how patients are truly doing / breathing / feeling.
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